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It was twenty (minus fifteen) years ago today…
7 years ago
Showing posts with label hodgkins. Show all posts
Showing posts with label hodgkins. Show all posts
Tuesday, 11 August 2009
Its All About Raising Awareness
Hopefully some of you will be reading this, because of the emails I have sent, facebook messages I have sent or from me posting this on forums. I am starting to realise what a valuable tool the Internet is, especially for people affected by cancer at a younger age, as it is such a part of our lives.
Thursday, 23 July 2009
First Post :0)
Well this is my first post...
Have decided to start a blog after reading several inspirational blogs on the internet, and finding them helpful. It's something to entertain me as well, while I while away the days until my last chemo session...8th September!
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To set the scene I was diagnosed with Hodgkin's Lymphoma back in February of this year and since then my life has changed dramatically. I had just returned from a years travelling back in November (photo - me and travelling bubs, taken last October on Whitehaven Beach, East Coast of Australia) and life couldn't have been better, it had been one big party since I had been back, going out every weekend and catching up with friends and family.
They do say cancer is a life changing experience and it definitely makes you see life differently. Funnily enough 'Look at Life Differently' is the title of the lymphoma associations photography competition this year.
What a good lead in, to allow me to tell you that I will be littering these blogs with 'pretty' pictures as since my diagnosis I have invested in an SLR camera and have been happily snapping away ever since!
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This blog is designed a) as a way to keep those around me informed of my progress and b) provide an insight into living with lymphoma, to help those who have been diagnosed or for people who simply want to find out more.
If this blog just helps one person, it will be worth it. Happy reading :0)
Monday, 16 March 2009
Low Bloods
Chemo day - the first thing they had to do was take more bloods as on Friday my neutrophill count was 0.06 and under 0.5 is significant meaning you have neutrophina. Saw my Dr, he said it was good to see me looking better and eating. He looked at my mouth ulcers and said they were due to my low white blood count. He ran through my revised medication and talked about the possibly of delaying the chemo if the bloods were still bad. He also discussed giving me a injection to boast my white blood cells. Had to wait until 1pm to get my bloods back, yes they were still low but they were going to go ahead, they were 0.2. Didn’t end up getting away until nearly 5.00pm. Had another lot of pills and the growth injection to have tomorrow. Despite leaving at 5.00pm it didn’t take too long to get back and I didn’t feel car sick, bonus!
Steroids must be working again as the next day I made carrot cake (used my own carrot cake recipe but used the icing from this one), it turned out well and tasted even better (my cousin Nick will vouch for that I am sure!).
Thursday my red cheeks had returned, it seems that a few days after chemotheraphy I get this flushed look on my face, random!
Went out for Charlene's birthday on Saturday night, first 'big' night out wearing my head scarf, all went ok and soon forgot about it, was lovely to see everyone.
Monday we went to Shuttleworth for a walk around, as it was such a nice day, took some photos.
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Monday, 9 March 2009
Day 7 Syndrome, Hospital Again and Again!
Day 7 after second chemotherapy - Woke up feeling sick and had stomach cramps, hadn’t slept very well at all. Rang the hospital and they said to come down. Felt very sick in the car, mum had to drive like a learner and I had to have the windows open!
Dr saw me at about 11.30 am; first thing he said was 'oh dear is that a vomit bowl!' We sat and had a chat about why I had come in, sore mouth (which was actually much better), sickness, stomach cramps and breathlessness. He did a thorough examination, and was very impressed with the size or not of my lump and said that my chest was absolutely clear. He said he thought the breathlessness was nothing to worry about but would check my saturation levels and pulse rate after on the ward, which were all ok. I’ve just got to accept that I am ill and am not going to be running any marathons. While I was there he said he was going to do chest x-ray just to check for bleomycin toxicity but stressed it would be clear, it would be very unlikely that after only one cycle of chemotherapy.
He stressed again how impressed he was with the size of the lump, he said it was comparable to his faster patient to date, in terms of lump reduction. He thought it would be very unlikely that the abdomen lumps and cancer in the liver wouldn’t be doing the same thing. He said I had good flexion in my back and he thought the twinges I am feeling were not the lymphoma flaring but being killed off. In terms of the abdominal pains he said he could do a CT scan but wanted to hold off because of radiation. He thought it could possibly be a reaction to the bleomycin and could take the bleomycin out if needed and if it was that causing the problems.
The nurse gave me my Clexane and came in for a little chat. She said she liked my headscarf, with everything else that had been going on I had forgotten it was the first time I was wearing a scarf out in public.
Got back at 2pm, just managed to get in the door before I throw up in the utility room sink, had felt sick in the car but not like I was actually going to be sick, and then when I got in the door, woosh, the dog was not impressed, with me retching I think he thought he had done something wrong!
Afterwards I went upstairs to bed and just tried to sleep to stop the sickness feeling. At 3.30 pm I was sick again, got a few moments of relief after I had been sick but then the feeling came back. Mum rang the hospital, and they said take an Ondansetron and try sips of fizzy water. She said to ring back if I kept vomiting.
At 6pm took some paracetamol as my stomach was very painful. Mum and I watched a film, well I had my eyes shut, dozing through most of it and trying to ignore the pain. Later on that evening I was still in a lot of pain, so we rang the hospital again. Dr said his gut feeling was, it is my whole system knitting together to fight chemo. If it got worse throughout the night, as in me not being able to move and real pain instead of discomfort then I must go to hospital. He reiterated that if it continued he could do a scan just to check there wasn’t any kind of blockage or twist anywhere. He had been doing a bit of internet searching and thought it could be Vinblastine type abdominal cramps , which is common in young people taking a sister drug of Vinblastine. He asked if I had any painkillers and I remember I had some Dihydrocodeine that I had been given on Boxing Day. He said to take one and it should work within an hour. Took one Dihydrocodeine and it made me feel spaced out and I went to sleep on the sofa practically straight away.
Woke up to not much improvement, felt too ill to go down to the surgery so mum gave me my Clexane injection! Spent the morning in bed. Had lunch, a gingerbread man and smoothie at 2pm, 2.30pm it all came back up! Mum rang the hospital back and Dr said he wanted me to go down to the hospital to stay in overnight for obs and to get the sickness and pain under control. Don’t know how I managed the car journey, had to stop several times. Stayed overnight, had 2 bags of fluid, and Lorazepam a ‘happy high drug’. Discharged the next morning.
Friday - woke up feeling not too bad, the pain seemed to have eased and I didn’t seem to feel sick. It didn’t last long though, I started to feel sick and the pain came back while I was having breakfast. My Dr wanted me to come in to hospital to have a CT scan and stay until Sunday. I wasn’t best pleased with that but have to admit I wasn’t feeling very good at all.
Had my CT scan, much the same as last time. A doctor came to take some bloods, and managed to cover me in blood, I looked like something out of Saw!
My Dr came to see me in the evening, he started off by saying he was glad that he had done a CT scan because it showed really good results. He said ball park figure, that the tumours had reduced by about 50%. He said my liver has reduced a lot in size. He said he thought the sickness and cramps were due to mass tumour kill as so much has been killed off. He said he wanted to keep me in until Sunday to get this under control, he was going to be over cautious this time as he had sent me home too early on Thursday.
Had an restless night, what with the man a few rooms down from me who had a monitor on all night and I could hear it bleeping,and they also came in to do my bloods at 2am, then at 6am to do my obs. After that I dozed until breakfast arrived. Spent the day whiling away the hours in hospital.
Sunday morning was actually asleep when the nurse came in at 6.45 am to do my obs and give me my medication, the pain seems to be at its least since Monday and no sickness, looking good.
Managed to eat my breakfast at 8.00am. Felt a bit sick during the morning, just when I thought I had got rid of it. Dr came to see me and said that as long as I was ok at lunchtime I could go home. Felt very upset that I was feeling sick again, just don’t know how I am going to cope with it for 6 months. Lunch came at 12.30pm and I suddenly felt very sick, couldn’t eat it and had to ask the nurse for some anti-sickness stuff. Laid on the bed and tried to concentrate on my breathing, eventually it went off. After a few hours we decided it was best for me to go home. The nurse had a little chat with me about ways to try and stop the sickness. Back home for a day before I have to go and have more chemo, oh the joys!
Spose constant sickness is a good way to loose weight!
Dr saw me at about 11.30 am; first thing he said was 'oh dear is that a vomit bowl!' We sat and had a chat about why I had come in, sore mouth (which was actually much better), sickness, stomach cramps and breathlessness. He did a thorough examination, and was very impressed with the size or not of my lump and said that my chest was absolutely clear. He said he thought the breathlessness was nothing to worry about but would check my saturation levels and pulse rate after on the ward, which were all ok. I’ve just got to accept that I am ill and am not going to be running any marathons. While I was there he said he was going to do chest x-ray just to check for bleomycin toxicity but stressed it would be clear, it would be very unlikely that after only one cycle of chemotherapy.
He stressed again how impressed he was with the size of the lump, he said it was comparable to his faster patient to date, in terms of lump reduction. He thought it would be very unlikely that the abdomen lumps and cancer in the liver wouldn’t be doing the same thing. He said I had good flexion in my back and he thought the twinges I am feeling were not the lymphoma flaring but being killed off. In terms of the abdominal pains he said he could do a CT scan but wanted to hold off because of radiation. He thought it could possibly be a reaction to the bleomycin and could take the bleomycin out if needed and if it was that causing the problems.
The nurse gave me my Clexane and came in for a little chat. She said she liked my headscarf, with everything else that had been going on I had forgotten it was the first time I was wearing a scarf out in public.
Got back at 2pm, just managed to get in the door before I throw up in the utility room sink, had felt sick in the car but not like I was actually going to be sick, and then when I got in the door, woosh, the dog was not impressed, with me retching I think he thought he had done something wrong!
Afterwards I went upstairs to bed and just tried to sleep to stop the sickness feeling. At 3.30 pm I was sick again, got a few moments of relief after I had been sick but then the feeling came back. Mum rang the hospital, and they said take an Ondansetron and try sips of fizzy water. She said to ring back if I kept vomiting.
At 6pm took some paracetamol as my stomach was very painful. Mum and I watched a film, well I had my eyes shut, dozing through most of it and trying to ignore the pain. Later on that evening I was still in a lot of pain, so we rang the hospital again. Dr said his gut feeling was, it is my whole system knitting together to fight chemo. If it got worse throughout the night, as in me not being able to move and real pain instead of discomfort then I must go to hospital. He reiterated that if it continued he could do a scan just to check there wasn’t any kind of blockage or twist anywhere. He had been doing a bit of internet searching and thought it could be Vinblastine type abdominal cramps , which is common in young people taking a sister drug of Vinblastine. He asked if I had any painkillers and I remember I had some Dihydrocodeine that I had been given on Boxing Day. He said to take one and it should work within an hour. Took one Dihydrocodeine and it made me feel spaced out and I went to sleep on the sofa practically straight away.
Woke up to not much improvement, felt too ill to go down to the surgery so mum gave me my Clexane injection! Spent the morning in bed. Had lunch, a gingerbread man and smoothie at 2pm, 2.30pm it all came back up! Mum rang the hospital back and Dr said he wanted me to go down to the hospital to stay in overnight for obs and to get the sickness and pain under control. Don’t know how I managed the car journey, had to stop several times. Stayed overnight, had 2 bags of fluid, and Lorazepam a ‘happy high drug’. Discharged the next morning.
Friday - woke up feeling not too bad, the pain seemed to have eased and I didn’t seem to feel sick. It didn’t last long though, I started to feel sick and the pain came back while I was having breakfast. My Dr wanted me to come in to hospital to have a CT scan and stay until Sunday. I wasn’t best pleased with that but have to admit I wasn’t feeling very good at all.
Had my CT scan, much the same as last time. A doctor came to take some bloods, and managed to cover me in blood, I looked like something out of Saw!
My Dr came to see me in the evening, he started off by saying he was glad that he had done a CT scan because it showed really good results. He said ball park figure, that the tumours had reduced by about 50%. He said my liver has reduced a lot in size. He said he thought the sickness and cramps were due to mass tumour kill as so much has been killed off. He said he wanted to keep me in until Sunday to get this under control, he was going to be over cautious this time as he had sent me home too early on Thursday.
Had an restless night, what with the man a few rooms down from me who had a monitor on all night and I could hear it bleeping,and they also came in to do my bloods at 2am, then at 6am to do my obs. After that I dozed until breakfast arrived. Spent the day whiling away the hours in hospital.
Sunday morning was actually asleep when the nurse came in at 6.45 am to do my obs and give me my medication, the pain seems to be at its least since Monday and no sickness, looking good.
Managed to eat my breakfast at 8.00am. Felt a bit sick during the morning, just when I thought I had got rid of it. Dr came to see me and said that as long as I was ok at lunchtime I could go home. Felt very upset that I was feeling sick again, just don’t know how I am going to cope with it for 6 months. Lunch came at 12.30pm and I suddenly felt very sick, couldn’t eat it and had to ask the nurse for some anti-sickness stuff. Laid on the bed and tried to concentrate on my breathing, eventually it went off. After a few hours we decided it was best for me to go home. The nurse had a little chat with me about ways to try and stop the sickness. Back home for a day before I have to go and have more chemo, oh the joys!
Spose constant sickness is a good way to loose weight!
Saturday, 7 February 2009
Waiting for Chemo to Begin
The consultant had said that whatever type of lymphoma it was found I had, chemotherapy would start next week.
The days in between the first consultation and first chemotherapy session have been spent gathering as much information as possible and trying to read as much as possible in order to get my head around it all. The lymphoma association are a really good source of information.
The other battle going on is trying to keep my temperature under control, every night without fail I suffer high temperatures, ironic as it is one of the coldest February's outside and snow is on the ground. The temperatures seem to hit around dinner time and as a result I have no appetite and usually pass on dinner. Cold flannels, cold baths, ice creams nothing seemed to work! What with the temperatures and itchy skin I am finding it difficult to sleep at night and that is meaning I am sleeping more in the day.
Since 
my meeting with the consultant I have started having Clexane injections everyday to thin my blood because there is a risk the tumours can cause blood clots, which they obviously want to avoid. My consultant thought I could do them myself but I opted for a district nurse to come and give them to me. When the GP surgery is open I will go down there to have them everyday and on the weekends a district nurse will come to give them to me. There is a variety of techniques in giving them, I thought Mel described it well in her book, there is the dart player or the dancer (the nurse either stabs it in or punctures the skin slowly) and the firm squeeze or the gentle squeeze of the skin. They are unpleasant as they have to be given them in your stomach and the Clexane stings.
my meeting with the consultant I have started having Clexane injections everyday to thin my blood because there is a risk the tumours can cause blood clots, which they obviously want to avoid. My consultant thought I could do them myself but I opted for a district nurse to come and give them to me. When the GP surgery is open I will go down there to have them everyday and on the weekends a district nurse will come to give them to me. There is a variety of techniques in giving them, I thought Mel described it well in her book, there is the dart player or the dancer (the nurse either stabs it in or punctures the skin slowly) and the firm squeeze or the gentle squeeze of the skin. They are unpleasant as they have to be given them in your stomach and the Clexane stings. My consultant rang on Friday evening to say that the pathologist had got back to him and my Lymphoma was Hodgkin's which is what we wanted, he said I would start ABVD chemotherapy on Tuesday. Sally and Verity came to visit at the weekend which took my mind of worrying so much. Next week is the start of me getting better.
Wednesday, 4 February 2009
Unanswered Questions and More Waiting
Wednesday was the day I was to meet my consultant. Had the last appointment of the day so the morning was spent trying to keep busy. All too soon it was 3pm and we were leaving for the hospital. Had my bloods taken before I met my consultant, obviously by an amateur because my arm went blue he was taking so long!
After another bit of waiting I met my consultant. It was explained that I did have lymphoma which is a type of cancer that originates in lymphocytes of the immune system. Lymphoma is cancer of the lymphatic system. The lymphatic system is made up of a series of vessels and glands, known as lymph nodes. These are spread throughout your body, much like your blood vessels. The lymphatic system is part of your immune system. It carries lymph around your body. Lymph is a fluid full of infection-fighting white blood cells known as lymphocytes.
When a person has lymphoma, some of their lymphocytes are 'out of control'. They divide in an abnormal way, or do not die off when they should. These abnormal lymphocytes can collect in the lymph nodes, which then enlarge as the lymphocytes form tumours. Lymphoma can also affect other organs in the body such as the liver, as in my case. The affected lymphocytes begin to lose their infection-fighting properties, making you more vulnerable to infection. The causes of lymphoma are still unknown.
There are two main types of lymphoma:
i) Hodgkin lymphoma - if the Reed-Sternberg cell is seen under the microscope. Hodgkin lymphoma can occur at any age, although most people diagnosed are between the ages of 15 and 35 or 55 and over. Around 1500 people are diagnosed with Hodgkin lymphoma each year in the UK. Hodgkin lymphoma affects more men than women. Hodgkin lymphoma is now very successfully treated, and the majority of people with it will be completely cured.
ii) Non Hodgkin lymphoma - any lymphoma that is not Hodgkin lymphoma. Around 9500 cases of non-Hodgkin lymphoma are diagnosed each year in the UK. It is more common in those aged over 55, and is one of the most common cancers in those aged 75 and over. There are many different types of non-Hodgkin lymphoma. Some types grow very slowly and others grow very quickly.
The pathologist had been unable to identify my type of lymphoma, but he had narrowed it down to two types, one being Hodgkin's and one being non Hodgkin's. Alarm bells then started ringing because I had read that non Hodgkin's lymphoma is less curable. My consultant explained that depending on what type of lymphoma I had, would determine the type of chemotherapy I had.
My consultant explained that whatever type of cancer I have it was fast growing and aggressive due to the masses evident on my scans, which I was allowed to look at. At the bottom of my scans it said suspected grade IV lymphoma, there it was in black and white, grade IV is as high as it goes. He didn't think I had had the cancer all that long, probably dating back to the end of my travelling trip, October/November time. We discussed the severity of the situation, the fact of it being cancer, and with that there are no guarantees but he did say that usually with these fast growing aggressive types they respond well to chemotherapy. Discussed the option of freezing my eggs, but he said that we didn't really have time, he said it was a gamble but if the lymphoma turned out to be Hodgkin's the type of chemo I would be having had a good rate of fertility with it. We also discussed the option of going privately and the next steps.
Had an examination and the doctor noted my extended abdomen which he suspected was because of the liver being full of lymphoma. He looked at my sores and scars on my feet from my itchy skin, which is a symptom of lymphoma and one he said would soon diminish with chemotherapy. Also went through my other symptoms - the night sweats, at around evening time everyday I would become uncomfortable hot and my temperature would rise to very high levels, back pain - which I was know taking pain killers for, me said he would leave me on them for now but want to take me off them, he suspected the back pain was due to my extended liver pressing on nerves, tiredness - another 'normal' symptom of lymphoma.
Came away feeling disappointed that I still didn't know what type of lymphoma I had and would have to wait for these results before I could get my head around what chemo I would be having and with that we still had lots of unanswered questions because many of them related to chemotherapy and the answers are chemo specific. Draining day, physically and emotionally.
After another bit of waiting I met my consultant. It was explained that I did have lymphoma which is a type of cancer that originates in lymphocytes of the immune system. Lymphoma is cancer of the lymphatic system. The lymphatic system is made up of a series of vessels and glands, known as lymph nodes. These are spread throughout your body, much like your blood vessels. The lymphatic system is part of your immune system. It carries lymph around your body. Lymph is a fluid full of infection-fighting white blood cells known as lymphocytes.
When a person has lymphoma, some of their lymphocytes are 'out of control'. They divide in an abnormal way, or do not die off when they should. These abnormal lymphocytes can collect in the lymph nodes, which then enlarge as the lymphocytes form tumours. Lymphoma can also affect other organs in the body such as the liver, as in my case. The affected lymphocytes begin to lose their infection-fighting properties, making you more vulnerable to infection. The causes of lymphoma are still unknown.
There are two main types of lymphoma:
i) Hodgkin lymphoma - if the Reed-Sternberg cell is seen under the microscope. Hodgkin lymphoma can occur at any age, although most people diagnosed are between the ages of 15 and 35 or 55 and over. Around 1500 people are diagnosed with Hodgkin lymphoma each year in the UK. Hodgkin lymphoma affects more men than women. Hodgkin lymphoma is now very successfully treated, and the majority of people with it will be completely cured.
ii) Non Hodgkin lymphoma - any lymphoma that is not Hodgkin lymphoma. Around 9500 cases of non-Hodgkin lymphoma are diagnosed each year in the UK. It is more common in those aged over 55, and is one of the most common cancers in those aged 75 and over. There are many different types of non-Hodgkin lymphoma. Some types grow very slowly and others grow very quickly.
The pathologist had been unable to identify my type of lymphoma, but he had narrowed it down to two types, one being Hodgkin's and one being non Hodgkin's. Alarm bells then started ringing because I had read that non Hodgkin's lymphoma is less curable. My consultant explained that depending on what type of lymphoma I had, would determine the type of chemotherapy I had.
My consultant explained that whatever type of cancer I have it was fast growing and aggressive due to the masses evident on my scans, which I was allowed to look at. At the bottom of my scans it said suspected grade IV lymphoma, there it was in black and white, grade IV is as high as it goes. He didn't think I had had the cancer all that long, probably dating back to the end of my travelling trip, October/November time. We discussed the severity of the situation, the fact of it being cancer, and with that there are no guarantees but he did say that usually with these fast growing aggressive types they respond well to chemotherapy. Discussed the option of freezing my eggs, but he said that we didn't really have time, he said it was a gamble but if the lymphoma turned out to be Hodgkin's the type of chemo I would be having had a good rate of fertility with it. We also discussed the option of going privately and the next steps.
Had an examination and the doctor noted my extended abdomen which he suspected was because of the liver being full of lymphoma. He looked at my sores and scars on my feet from my itchy skin, which is a symptom of lymphoma and one he said would soon diminish with chemotherapy. Also went through my other symptoms - the night sweats, at around evening time everyday I would become uncomfortable hot and my temperature would rise to very high levels, back pain - which I was know taking pain killers for, me said he would leave me on them for now but want to take me off them, he suspected the back pain was due to my extended liver pressing on nerves, tiredness - another 'normal' symptom of lymphoma.
Came away feeling disappointed that I still didn't know what type of lymphoma I had and would have to wait for these results before I could get my head around what chemo I would be having and with that we still had lots of unanswered questions because many of them related to chemotherapy and the answers are chemo specific. Draining day, physically and emotionally.
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